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Wednesday, 22 October 2014 00:00

My Usher Journey to date, in short!

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Valentines Day 1996 was the day everything really changed.

A very lovely man with the kindest face and sensitive nature had sat on the bed and told us our beautiful daughter had sensorineural hearing loss, it was looking like a severe hearing loss and she'd need hearing aids all her life - I remember feeling all hot and sweaty and thinking I had to be dreaming and a nightmare at that.

I remember Andy saying "it'll be alright" I was almost angry with him, this is not a cut knee, this is life changing and that was an understatement.

I cannot really describe my own emotions at that time, my grandmother was terminally ill with cancer and my parents were busy caring for her.  The call to my mum was emotional, both my parents were distraught for Molly but also for me as this was something none of us had tackled before and it was going to take strength and determination to get us to where we wanted to be.

Always the "Daddies Girl" my Dad, voice quaking with emotion said "Jane, we are all dealt a hand of cards, it's how we play them" how right he was and many a time I've relayed his wise words

My first wish, more like demand was "Molly will speak" I didn't care how, she just would because I wanted to be able to speak to my daughter and not to become her voice piece and I do not mean that to sound disrespectful to those who chose alternate routes for their children, it was just what I wanted and I with the support of my family would work on it together with the local services who accepted these wishes and the long journey to speech began.

Our two sons weren't really old enough to understand the latest challenge in our lives and in some ways that was good and in others not.

Harry our oldest had embraced being a big brother but had been a touch resentful on each new arrival having been an only child for nearly four years, sharing attention had taken a while.

Harry was at school, year 2, and had the demands of learning and SATS to be dealing with and even then was what I'd describe as a "Plodder" he was one of the youngest in his year, having summer babies can be difficult and for him reading took a while but he got there eventually and for all the worry of everything he went on to do very well taking everything in his stride.  University was his aim and he achieved that and got his degree.  I'd still describe him as a "Plodder" a very laid back character who quietly just gets on with things without a fuss.

Harry doesn't t like a fuss, he's a very loyal person who just quietly gets on with life, enjoying the things that make him happy, his love of sport and particularly Everton Football Club, a few pints with the boys and his close relationship with his younger brother make up the lovely man he has become.

Jack (Juice) was only nearly 4 when deafness entered our lives. A completely different character, Juice didn't speak much, he didn't have to because Harry used to speak for him, to this day he's a young man of few words but his few words are always meaningful.

Juice was a very interesting little character, fascinated by how things work, initially in awe of lorries but swiftly moved onto aeroplanes.

A real Nannie and Grandad's boy he and Harry spent a lot of time with my parents who had embraced grandparenthood and took the boys to all sorts of places and made them their absolute priority, so much so that a weekend wasn't a weekend unless they saw Nannie Pat and Grandad Colin, they all just adored each other - looking back, I hope to emulate being a grandparent, when my time comes (no rush kids) just like my parents did, absolutely the best in every way and I owe my parents a massive thank you because their love and support helped me through many a challenge but what I thought was the biggest challenge of all - dealing with a deaf child.  It turned out to be the first big challenge of many!

It is fair to say we were all daunted but there was not one iota of me that would accept anything but "speech" for Molly  - I attended every possible group, session, event about deafness, deaf children, speech, speech therapy, deaf awareness, everything, in fact it became almost an obsession.  If I wasn't running around after my boys I was educating myself in order to support my daughter. 

I made learning to speak fun and we all played a role.  Yes there were tantrums but not too many and more through frustration than learning, looking back it was very demanding but isn't that a part of being a parent?  I was on a mission!

There is so much I could tell you about that period of my life but it's easier to say I got what I wanted through sheer determination, hard work and support, I was a complete nuisance when it came to getting support for Molly. 

On her arrival at primary school speech was in place and so too was support, even though it needed more work, we were getting where we wanted to be.

I made enemies but all in the name of getting what Molly needed and I was blinkered, but I'm glad, Molly was worth it.

When I think back to then I feel real pride in this achievement but didn't know at that time how important speech would be.  I could have that all important chit chat about girly things with my daughter, I was happy with a capital H ...

As I passed Molly over to her Primary School I knew I had fought the fight and she'd get the additional support she needed at school as we awaited the arrival of Lily...

It seems strange looking back but for some reason I didn't like having 3 children and whilst I had 2 gorgeous boys and a daughter I somehow knew the 3 would become 4.

I was pleased to get a second daughter, but panic struck she too might be deaf, not because deaf is bad but because of its many challenges and I'd not wish that on anybody, as a result she was tested immediately and thankfully was good to go.

I was glad Molly would be a big sister as I felt she'd relish this new role and that she'd no longer be the baby and only daughter but one of four and that she'd mature.

Indeed she did, we saw another side of Molly, a very gentle and caring little person, she never complained about anything and more often than not had her trademark smile and ironically the most beautiful, thoughtful, warm eyes.

Little did we know the heartbreak behind those eyes!

When she smiles, even to this day, the world smiles with her..

I cannot praise Oldfield Primary School enough, I know I was a pain but they worked their magic with Molly and by 8/9 her report from Speech Therapy read her speech was only a year behind that of her peers, that said, considering her speech delay as a result of severe deafness she had already achieved beyond our wildest dreams, by 11 she was right where she should be - the relentless hard work, fun and games to get to here had paid off and Molly's spelling and written English was quite astonishing.  All that reading and her inquisitive little mind had reaped the rewards

Molly's SAT results were outstanding and she chose the smallest of senior schools to go to and she was confident enough to start afresh, most of her school friends heading elsewhere.

It was a great choice until usher syndrome reared it's ugly head.

Molly's speech has almost become a trademark of what can be achieved.  Molly hears very little without hearing aids and struggles in crowds or with lots of background noise so very reliant on technology that she uses to her advantage.

If she's unwell and doesn't wear her hearing aids she's a different person just like in the dark she sees nothing whereas during the day in good light she uses her small window of sight very well.

Just recently we saw Professor Andrew Webster at Moorfield Eye Hospital and he was astonished by her speech stating her tone and ability was outstanding for somebody with usher syndrome, I have to admit I was quietly beaming as I knew her communication skills would prove so important even before the Usher diagnosis.

I'm not going to dwell on this accept to say if the school had had the specialist support and not relied on deaf support and visual impairment support things would have been very different.

It is not ok to assume deaf awareness or visual impairment support is adequate there has to be specialist support for the deafblind.

I choose to forget the couple of years that followed upon Usher diagnosis accept to say I have never in my life experienced such cruel and vile treatment of one so vulnerable.

That said, much was learnt and after something of a search for a college happy to take on Molly I found Strodes College who have the best SEN (special education needs) Department.

I remember my first conversation with Nick like it were yesterday, he was interested in Molly's academic achievement before anything and having established that declared the door to be open but that they were not Usher aware, however, they were happy to work with us and the local sensory team.

Indeed it is all about attitude.

Molly describes her happiest years at school as those at Primary School as back then she wasn't blind and life was easy and fun, however, she loved life at Strodes College, not only were her and Uni completely accepted their genuine care and support rekindled her confidence as a young deafblind guidedog owner, she could be herself at last - no trying to fit in, she was finally happy in her own skin.

Achieving 2 A*distinctions in art and design and a C in English Lit/Lang for anybody is quite an achievement but to be deafblind is like reaching the stars, at least that's what I think, Molly, however wasn't happy with her C but that's the perfectionist in her!

Whilst all this has been going on and as a result of bullying coupled with the sheer lack of awareness of Usher Syndrome Molly has become quite the advocate, ambassador and activist for those living with this cruel condition and is never happier than raising awareness of Usher issues.

Pride cannot describe where I'm at right now, "Mr Plod" just set up in his first own home, "Mr Inquisitive" about to realise his childhood dream and qualify as a pilot "Miss Determination" reaching the stars and "The Flowerpot"  bright as a button following right behind intending to head into teaching..

I have had to fight every step of the way for Molly.  The boys and Lily have gone through what I think is a good system but just not geared up for those with special and specific needs (I will blog about this seperately). It is not ok to assume or just put kids in special schools and either assume they know what they are doing or just hope for the best.

Parents shouldn't have to fight for their kids but sadly it is he who shouts loudest and has the strength to stand up to the system, it has tried to break me on many occasions but my resolve is firm and will always be so.

Molly has far to go on her journey but she knows she will never be alone,parents, two big brothers, a younger sister, amazing family and friends who will always support her on her way and all very proud.....

The Molly Watt Trust is now my priority, I don't want others to have to fight like I did or those like Molly to have to accept second best.

We at MWT want to make a difference, however small, to those living with Usher Syndrome.

Raising awareness remains our main aim but there will be fundraising for usher related projects and we invite anybody interested to become a part of our charity in one way or another......

For any details on MWT please contact us.

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